Britain has a higher rate of stillbirth and neonatal death than many other countries in Europe – in 2016 one in every 139 births ended in stillbirth or neonatal death.
The grief and devastation that bereaved parents feel is often compounded by the fact that they never realised a baby could die in modern-day Britain. However, sadly, stillbirth and neonatal death is a reality with 15 babies dying each day in the UK. It is not something that comes up in antenatal classes; no one talks about it; and often people worry about ‘frightening pregnant women’.
Death is a difficult topic to talk about anyway, but when you align that with birth and what should have been new life, it makes it almost impossible for many people to know how to start a conversation. And that leaves parents who suffer this loss feeling isolated and rejected, when what they desperately need is to feel supported and included.
But women deserve evidence-based information so that they can make informed decisions, and so that they don’t feel alone and isolated if the worst happens. In other areas of health, and life in general, people are told about risks and possible outcomes as a matter of course. Cancer and the associated risks and effects are openly discussed; airlines share safety information at the start of flights – and in these situations everyone feels it is right for the information to be shared. We need to break the silence and taboo around stillbirth and neonatal death and talk openly about them, however difficult it is.
When a baby dies, midwives and other health workers trained in bereavement are incredibly important; they have the knowledge and expertise to support bereaved parents and to understand their needs. Unfortunately, many maternity units do not have a specialist bereavement leads. In 2016 Sands published an audit of maternity units, and only 38 per cent of units had a specialist bereavement-trained midwife.
A bereavement midwife not only cares for the bereaved parents and families, but also provides support and leadership for the other staff involved. The death of a baby can be devastating for staff, but it is vital that they know how to support the parents; less experienced staff may struggle if they have no one to turn to and learn from.
Even health professionals can struggle to find the right words to talk about the death of a baby before, during or shortly after birth. How do you tell parents that there is no sign of a heartbeat on a scan? How do you tell a new mum that her baby has been born with no signs of life? A bereavement lead can guide staff at this crucial time.
The National Bereavement Care Pathway is a collaborative initiative which Sands is leading on, that aims to make sure that all bereaved parents and families receive excellent and equal bereavement care wherever their babies die. It is soon to be rolled out across the UK, and through this initiative it is hoped that all Trusts and Health Boards will appoint bereavement leads.
Ultimately, we want to reduce the overall rates of stillbirth and neonatal birth so fewer parents and families have to suffer these tragedies. How do we do this? By making sure that women understand the steps they can take to reduce the risk of their baby dying, such as telling someone if their baby’s movements change, attending antenatal appointments, and stopping smoking. Also by supporting healthcare professionals to provide safe care through continuity of carer and multidisciplinary team working.
At Sands we want to reduce the number of babies dying, but when a baby does die we want to hold those parents and families and make sure that they get the support and care that they both need and deserve.